Of Love & Trauma [a caregiver's confessional]

It's November, which means it's National Family Caregivers Month. I didn't want to let it go by without saying a few words, even if it's just for me to "get it out".

As many of you know, my older sister Cait had a liver transplant when I was 22. The years leading up to the October surgeries were years of adjustment, readjustment, and readjusting just a little bit more. 

There is something profoundly terrible and unique about being a caregiver to someone who is chronically ill. You cannot understand until you've lived it, seen it for yourself. You feel as if there is no one in the world who quite understands what goes through your mind. And oh, you feel if anyone did know the bubbling mire and mess that is your everyday train of thought, they'd toss you straight into the loony bin.

In any given day you can feel/think:

Anger at the situation. 

Peace that everything's going to be okay. 

BUT WHAT IF EVERYTHING'S NOT GOING TO BE OKAY OH MY GOD. 

Someone hug me. 

Nobody touch me. 

On second thought, nobody even LOOK at me. 

I want to be alone. 

Hold me.

I love her so much, I'd do anything to stop this. 

*break for anxiety attack* 

Has she eaten anything today? 

Oh shit - have I eaten anything today? [Yes you did, 2 Snickers bars. Go for a walk, will you?] 

Why is she in pain? 

Did she take her medicine? 

This is just a season. 

This is never going to end. 

God I know you're with us. 

Oh I can't keep doing this, God. 

I'm angry today. 

Now I'm okay. 

I'm mad at the disease. 

Wait, hold up - now I feel mad at the person with the disease?!

Which makes me a horrible person by default.

No, maybe that's normal...?

I can't be normal after years of this. 

To say that caregivers (specifically family caregivers) go through the gamut of emotion and human experience - anger, fear, hope, tremendous guilt, unshakable love, anxiety, exhaustion - is a massive understatement. 

You can lose yourself. You often do. Sometimes, I feel that I lost an irreplaceable piece of myself, my "roaring twenties" youth, my selfish years...becoming one in a family of caregivers at such a young age (my sister's illness began when I was 17).

But when I look back, I know that I wouldn't change the choices I made, the way I became a caregiver, even at its hardest times. 

Did I sacrifice? 

YES. 

We all did. 

But let me tell you...it is amazing the things you can push yourself through, make yourself survive - when you stop thinking of yourself first.

I remember the prayers I begged while laying on the bathroom floor, the crying in my car with the radio blasting, the moments of asking why Cait? Why not me instead of her? The guilt that it had afflicted her and not me was heavy sometimes. 

And yes, over a decade after this journey began, there are days, moments when the trauma still shakes me - when I get the whiff of a scented candle we lit often during those hard months, or I get a flashback of a particularly difficult day, or when the slimy feel of alcohol hand sanitizer reminds me of the 3 weeks we spent at Massachusetts General Hospital - waiting, praying, crying, praising. 

When I feel trauma, regret from those years creeping up on me, I try to remember that my life - OUR life, our outcome - could have been so different. Our outcome was a beautiful miracle of a dearly-loved daughter, sister, fiance, friend - completely healed. Thanks be to God. 

The outcome was worth it all. Worth every hard thing. 

Put simply, I'm forever thankful to have been a caregiver, despite the scars.

I'm infinitely grateful. 

I love a little harder now.

I cry a little less now, because I cried myself dry during those years. 

I'm still tired sometimes. 

I've been forever changed, altered by the experience. <3

Also, I can't talk about National Family Caregivers Month without giving a shout-out to my Aunt Laura, who was my Gramma's caregiver right up until Gramma went Home to be with Jesus. Because she sacrificed so much of her own time, life, space, and yes, sometimes her sanity - my Gramma Rosie - my sweet spirit animal and fellow inappropriate-joke-teller - lived in complete comfort, surrounded by love and acceptance even on the days she couldn't remember who or where she was. Laura, you're kinda my hero now, just so you know. :) You gave Gramma the dignity, comfort and peace of living among her own things, among the people she loved most - right until the end. Thank you. 

xo,

Erica

If anyone reading this is in a similar situation of being a caregiver, feel free to reach out to me. It helps to have someone to talk to who knows what you're going through. I'd be honored to be that person, if you need someone.] xo